Home diagnostic testing is becoming part of the modern medical landscape, but many ethical and policy questions remain unresolved. Most of them first surfaced during the long regulatory deliberations over the home HIV test, the first home test for a contagious illness sold in the United States. Between 1989 and 2012, federal regulators and their consultants debated the ideal metrics for such a test, its benefits, and its potential harms for both individuals and communities. Ultimately, two iterations of the home (...) HIV test were marketed in the United States; neither one of them changed the course of the national HIV epidemic, as hoped. This failure has powerful implications for home testing for other contagious diseases. (shrink)

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos should (...) indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases. (shrink)

Assisted suicide is a tragic issue, one of those for which the tools of mere logic are inadequate and in which the power of the individual case is compelling and seductive but not necessarily clarifying. Meaningful dialogue is difficult. Persuasion is limited because the resolution of the issue, on a moral level, must be founded upon fundamental notions of what it means to be human, especially in the midst of suffering or disability or at the point of death.

This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several (...) important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives. (shrink)

The history of nursing in the home: revealing the significance of place in the expression of moral agency The relationship between place and moral agency in home care nursing is explored in this paper. The notion of place is argued to have relevance to moral agency beyond moral context. This argument is theoretically located in feminist ethics and human geography and is supported through an examination of historical documents (1900–33) that describe the experiences and insights of American home care/private duty (...) nurses or that are related to nursing ethics. Specifically, the role of place in inhibiting and enhancing care, justice, good relationships, and power in the practice of private duty nurses is explored. Several implications for current nursing ethics come out of this analysis. (i) The moral agency of nurses is highly nuanced. It is not only structured by nurses’ relationships to patients and health professionals, i.e. moral context, it is also structured by the place of nursing care. (ii) Place has the potential to limit and enhance the power of nurses. (iii) Some aspects of nursing's conception of the good, such as what constitutes a good nurse–patient relationship, are historically and geographically relative. (shrink)

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.

In the theater the fictional Dr. Kelekian’s relief that he does not have to talk to family members about his patient’s cancer treatment draws uneasy laughter from the audience. Doctors, patients, and family members alike recognize the situation, even if hearing it so baldly expressed discomfits them.Why do physicians and other health care professionals, including lawyers and bioethicists, so often view families as “trouble”? And why do families so often see medical professionals as uncaring and uncommunicative? Presumably everyone wants the (...) same goal—recovery or the best possible outcome for the patient. And yet trouble clearly exists. We do not see the problem as one of “dysfunctional families” or “callous doctors,” although there are undoubtedly many of each. (shrink)

In the theater the fictional Dr. Kelekian’s relief that he does not have to talk to family members about his patient’s cancer treatment draws uneasy laughter from the audience. Doctors, patients, and family members alike recognize the situation, even if hearing it so baldly expressed discomfits them.Why do physicians and other health care professionals, including lawyers and bioethicists, so often view families as “trouble”? And why do families so often see medical professionals as uncaring and uncommunicative? Presumably everyone wants the (...) same goal—recovery or the best possible outcome for the patient. And yet trouble clearly exists. We do not see the problem as one of “dysfunctional families” or “callous doctors,” although there are undoubtedly many of each. (shrink)

Background: Over the last decade, new healthcare policies are transforming healthcare practices towards independent living and self-care of older people and people with a chronic disease or disability within the community. For professional caregivers in home care, such as nurses, this requires a shift from a caring attitude towards the promotion of patient autonomy. Aim: To explore how nurses in home care deal with the transformation towards fostering patient autonomy and self-care. Research design and context: A case study was conducted (...) in a professional development course for home care nurses, including participant observations and focus groups. The theoretical notion of ‘relational agency’ and the moral concept of ‘practices of responsibility’ were used to conduct a narrative analysis on the nurses’ stories about autonomy. Participants: Eight nurses, two coaches and two university lecturers who participated in the learning circle. Ethical considerations: Informed consent was sought at the start of the course and again, at specific moments during the course of the learning circle. Findings: Three main themes were found that expressed the moral demands experienced and negotiated by the nurses: adapting to the person, activating patients’ strengths and collaboration with patients and informal caregivers. Discussion: On a policy and organisational level, the moral discourse on patient autonomy gets intertwined with the instrumental discourse on healthcare budget savings. This is manifested in the ambiguities the nurses face in fostering patient autonomy in their daily home care practice. To support nurses, critical thinking, moral sensitivity and trans-professional working should be part of their professional development. Conclusion: The turn towards autonomy in healthcare raises moral questions about responsibilities for care. Promoting patient autonomy should be a collaborative endeavour and deliberation of patients, professional and informal caregivers together. (shrink)

Frailty has recently become a medical category with physical symptoms that define its diagnosis. This paper uses the resources of an ethics of care to analyze the relationship between frailty and fragility or vulnerability, the positives of frailty becoming a diagnostic category, and some problematic aspects of the same process.

This commentary responds to “Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice,” by Coleman Solis and colleagues, in the May‐June 2023 issue of the Hastings Center Report. More specifically, we respond to the authors’ call for “inquiry into the nature, value, and practice” of home care. We argue that the most urgently needed normative reset for thinking about care work is the replacement of dominant individualistic thinking with systemic thinking. Deepening a focus on the social, (...) economic, and historical forces that shape the state of contemporary care work will help bioethicists to argue more effectively for improvements to working conditions. In turn, better working conditions will ease the oppositional stance between caregivers and receivers that has been set up by the current system, enabling all parties involved to better pursue the feminist ethical ideal of care. (shrink)

Discharge planning for vulnerable infants and children is a collaborative, inter-disciplinary, decision-making activity that is grounded in the ethical complexities of clinical practice. Although it is a psychosocial intervention that frequently causes moral distress for professionals and has the potential to inflict harm on children and their families, the process has received little attention from ethicists. An ongoing study of the transition of technology-dependent children from hospital to home suggests that the ethical issues embedded in the discharge-planning process may be (...) concealed by dominant cultural values, institutional policies, clinical standards, historical precedents, and legal regulations. (shrink)